Navigating end-of-life care

It is natural for a person to struggle with something outside their
control. Most situations in life are navigable with one exception: its end.
No matter the underlying cause, supporting a loved one in palliative,
hospice, or other end-of-life care is emotionally trying.

When a patient moves to end-of-life care, family members are often tasked
with managing challenging conversations around death and dying. Since these
topics are often avoided in conversation, patients struggle to honestly and
clearly communicate their thoughts and feelings related to their care
preferences — meaning family members can find it difficult to follow their
wishes, communicate with caregivers, or inform others.

Fortunately, there are
resources available
to help families navigate these final stages of a person’s life.

Experts suggest family members and loved ones first try to subdue their
need for any kind of predetermined road map or plan. There is no uniform
formula for such a deeply personal experience, and the expectation for one
will only lead to anxiety and tension. Once people shed this underlying
need to control the uncontrollable, they can then turn their focus to
what will best benefit the patient.

How to face the reality

Difficult as it may be, patients and family members alike are encouraged to
face the reality of care head-on. Being forthright and direct creates less
ambiguity with the patient and gives family members precious additional
time with their loved one. Families and patients should maintain clear,
open lines of communication — even when those conversations feel
uncomfortable.

It may be beneficial to hire a professional health care agent to help,
especially if the patient needs someone to speak on their behalf, or is
unable to make informed medical decisions.
Paul Malley, president of Aging With Dignity, suggests maintaining these dialogues
both verbally and in writing to
reduce the opportunity for muddled communication, acknowledging the tendency families have for playing “telephone” as
information travels.

Allowing independence when possible

It is also important to understand each person’s desire for autonomy,
regardless of where they are in their end of life journey. For someone
dealing with significant medical issues, it may feel as though they no
longer have agency over their own decisions. The basic choices a person
used to make day-to-day may not be available during end-of-life care. For
this reason, it is recommended that an
advanced directive
and living will be completed with an attorney before care begins. An
advanced directive states what the person wants done in the event that they
are no longer able to communicate decisions. A
healthcare power of attorney
can also be completed in advance. This legal document’s purpose is to
appoint a trusted person who has access to medical records and can make
decisions on someone’s behalf.

While advance care planning is helpful during end-of-life care, the final
stages of a person’s life and the ability to no longer communicate can
still be difficult to cope with personally. To ease the discomfort that
comes with this lack of independence, families and loved ones should
remember to give the individual choices when appropriate. For example, a
family member could ask, “I’d like to talk to you about what the doctor
said earlier. Is that okay?”
These questions should not be patronizing
but should instead acknowledge the patient’s desire for self-sufficiency
and emphasize a deep respect for their wishes.

For families navigating end-of-life care and patients in palliative or
hospice care alike, the best advice is to be an active learner and
listener.

End of life is uncharted territory for every person. The only way to be
prepared for life’s eventual conclusion is to
ensure there is an open dialogue
between all parties involved, and that to keep it open through the end of
care.

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